Human Tissue (Availability)

Mary Creagh Excerpts

Wednesday 23rd June 2010 Westminster Hall

[Mary Creagh (Wakefield) (Lab)]

It is a pleasure to make my first outing as the shadow spokesman for public health under your chairmanship, Mr Benton. I congratulate the hon. Member for East Dunbartonshire (Jo Swinson) on securing such an important debate. Having listened to her this morning, I feel that I know a lot more about the subject. She is well known in the House for her campaigning work on this issue. Her early-day motion 212, which she tabled in the previous Parliament, attracted the support of 64 hon. Members, and I am sure that a version of the same early-day motion will make its appearance through the course of this Parliament.

It was interesting to hear about the hon. Lady’s strong constituency link with the subject. I was certainly unaware that her constituency was a hub for research into life sciences. I also want to congratulate her on her tenacity. Using the Freedom of Information Act to get the data on the hospitals is the work of someone who pays great attention to detail. In fact, she found that there are huge differences between hospitals. It might be interesting to drill down into the information that she has to see whether there are geographical differences, or differences between foundation trusts, in respect of how samples are collected. The challenge for Ministers is to try to get everybody up to the level of the best, and it is clear that there is a very long way to go to achieve that.

I congratulate the Minister, who has responsibility for public health, on her appointment. She has been in a shadow public health role since July 2007. She had a distinguished career in the NHS for 25 years, including working as a district nurse. She also worked in hospitals, in research and, of course, in palliative care, so I am very interested to hear her comments in this debate. Furthermore, she is possibly one of the very few Conservative MPs who has served as a trade union steward, for the Royal College of Nursing, so I will also be interested to hear whether she has any response to yesterday’s Budget. We welcome her, and her experience, to her new post. Her direct experience of front-line working in the public sector will no doubt stand her in very good stead.

I also want to congratulate the hon. Members who have contributed to today’s debate. I know that my hon. Friend the Member for Alyn and Deeside (Mark Tami) has a very strong interest in the subjects of cord blood and stem cell research; we have debated those issues together on many occasions. He raised a very important point about the general altruism that the public feel.

Most people want to make their own contribution and help to contribute to medical science. Unfortunately, however, the level of knowledge and debate on these types of issues is very low. Part of that is due to the “ick” factor—none of us likes to think of our precious bodies as, first, dying; secondly, being cut in any way, even after death; and, thirdly, being kept in a large fridge with medical scientists examining them. But in fact the reality is that that is how human progress, particularly progress in science, has been made for generations, even centuries.

I also congratulate my hon. Friend the Member for Dumfries and Galloway (Mr Brown) on his contribution to the debate. I send my condolences to the family of his friend who suffered such a terrible tragedy while on holiday and I wish them courage as they fly out to Malta.

My hon. Friend raised the very important issue of the practical barriers that exist in this area, even when hospitals systematically want to collect people’s brains after death. There are also the issues of the death certificate and the conflict that exists between the medical side and the research side. The hon. Member for East Dunbartonshire has really hit on an important issue here, which requires some constructive and creative thought.

[Mark Tami]

I thank my hon. Friend for her very kind comments. There is just one point that I want her to address; I am perhaps returning to the point that I made earlier about how we and the media view this issue. She knows that my particular interest in this area is with the Alder Hey hospital and with children—unfortunately, that interest derives from a personal experience. But the fact is that a lot of medical conditions, such as sarcomas, particularly affect children; indeed, in some cases, medical conditions only affect children.

Given that children are particularly affected by some conditions, it follows that the research into those conditions must focus on children, but we find such research difficult to accept. It is very difficult to accept research on adults, but research on children, which sometimes very unfortunately happens as a result of a child’s death, is even more difficult to accept. However, it is something that we really need to address. As I said, some medical conditions only affect children.

[Mary Creagh]

My hon. Friend makes a very important point. Actually, this is one of those issues where the answer of the child involved might be very different from that of a parent. I think that children can be incredibly wise.

Speaking as a mother, the thought of one of my children dying is beyond comprehension, or beyond the limits of my imagination. It would be wrong for someone to ask for a donation from a bereaved parent who was dealing with that level of stress and grief. The time for asking for donation is not at the point of surgery or of death; it is when people are feeling generous and altruistic, when they feel that donation is something that can help other people.

Actually, children themselves are incredibly generous and incredibly thoughtful. Obviously, it is different for babies and toddlers, but children from about the age of six or seven can start to work these things out for themselves. Perhaps there is a role for education in the classroom to get children to talk more seriously about these issues.

I know that the work that the Anthony Nolan Trust has done in increasing the number of people on the bone marrow register is incredible. In Huddersfield and Wakefield—my constituency covered part of Huddersfield until the last boundary change—we had a very brave campaigning journalist at the Huddersfield Examiner who, when he was dying in his mid-20s, launched a huge campaign, including writing a blog about his experience. Through that campaign, he engaged with a lot of young people to get them on to the bone marrow register.

The issue of donating tissue, or blood marrow, is a bit like that of blood donation. I have spoken to my staff about it and said, “The blood lorry is outside, off you go”. There are responses such as, “Well, I don’t fancy rolling up my sleeve and having someone stick a needle in me”. However, if I ask, “If you have an accident on your way home, or your child is ill, would you want blood for your child or yourself?”, the answer of course is, “Yes”. The time to do it is during a tea break or a lunch break from work and not when people are under stress and dealing with a huge range of emotions.

I also congratulate the hon. Member for Cambridge (Dr Huppert) on his contribution to the debate. It is clear that science has lost a great researcher, but science’s loss is certainly the House’s gain. While he was speaking, I had a quick look on my BlackBerry and perhaps after the debate he can explain to me what “nucleic proteins” are, or whatever it was that he was researching—I am not even sure that I have used the right word there—because I got lost after about the first sentence of his contribution.

Computational biology is clearly an emerging area of work in this field and the hon. Gentleman spoke very eloquently about its potential to reduce the need for experiments on animals and, in some cases, to replace high-risk human trials, which would be welcomed by all parts of the House. He also leaves us with the interesting image of a “human on a chip”, which is something that I will go away and reflect upon.

Using his own experience as a researcher, the hon. Gentleman raised the important ethical issue of the anonymisation of samples, and he is absolutely right to do so. Certainly, in any research that I have ever participated in, I have always been told that the donated material will be held completely anonymously and untraceably. Now, however, we are moving forward with this biobank. I was invited to take part in that project. I went along because I was interested and I asked, “Are more women than men coming along?” I was told that, yes, there were, so there were all the usual biases that exist. We come back to the altruism factor and it seems that women tend to be more altruistic than men. I will leave that point hanging; if anyone wants to intervene on me, I am happy to argue the point. [Laughter.]

[Mark Tami]

My hon. Friend is exactly right. Men are certainly less willing to become stem cell donors and bone marrow donors, because we are cowardly and do not like needles. That is a particular problem.

What we must do with bone marrow and stem cell research, as the work of the Anthony Nolan Trust shows, is to put fewer obstacles in the way of donors. When it comes to giving blood, I know from my own point of view that my reaction is really, “Argh”—giving blood really terrifies people. However, mouth swabs can be used to donate other material. If we can get people past that first stage and if they are then approached because they are a potential match, I think that people will say, “I am a potential match and therefore I will go to that next stage and give blood”. If we somehow phase people by saying, “You’ve got to give blood and you must have various tests for things”, then people are less likely to come forward.

Obviously, with bone marrow and stem cell donation, we are not talking about people who have died. It is one of the few areas where someone can save a life by giving something. It is not painful, it does not take that long and someone can actually save somebody else’s life. There are tens of thousands of people out there who do not even know that they are potential life-savers. This issue is not only about how we raise awareness, but how we—

[Mr Joe Benton (in the Chair)]

Order. The intervention is too lengthy.

[Mary Creagh]

Thank you, Mr Benton. I was listening with interest and totally agreeing with my hon. Friend. Most of us will not have the chance to save someone’s life in the normal way. The chance to be an everyday hero does not come to many of us, and most of us do not have the medical skills that would enable us to be one. However, a person can undergo a small surgical procedure to take bone marrow out of their hip, and someone else will be walking around as a result of their generosity to another human being. I find that profoundly moving.

We need to look at where the responsibility lies for raising awareness. We as politicians are in this room debating the matter, so we are fulfilling our responsibility.

We have heard of the difficulties that the media create in their coverage of these issues, some of which have been difficult. The Alder Hey and Bristol Royal Children’s hospital cases were seen as national scandals, and rightly so, but the scientific community has a huge responsibility in this area. This country has a problem with science. We have a framework that enables us to be world leaders in life sciences and all kinds of areas, and we have a population that is willing to run marathons, to do fun runs for breast cancer and cancer research and to work and raise money. Yet there is a gap.

Presumably, every one of the women who participated in the five-mile fun run in Wakefield—the race for life—did so because they knew someone who had died of or suffered from breast cancer. All those women could have been offered the chance to be screened for blood marrow donation or to talk about tissue sampling. The world of fundraising needs to work more closely with the world of research. I do not know how that would happen, but I think that the scientific community, whether it is researching genetically modified foods, cancer or Parkinson’s, has its own responsibility. However, it has not found its voice in this area.

We have an image of scientists working in their labs in white coats. It has been a long time since I have been in a research lab, so I do not know whether they still wear those coats, but they do not get on the telly. We tend to hear about sensational breakthroughs, but when we read the small print, we find that they are at least five, six or 10 years away. There is media sensationalism about what might be small steps at the beginning, yet no real conversation about the long, arduous and painful work that scientists have to go through to achieve a breakthrough. I agree with the hon. Member for East Dunbartonshire that there is not enough access to tissue samples, but there are difficulties at the interface between the two worlds.

My hon. Friend the Member for Alyn and Deeside mentioned cord blood collection. The Royal College of Midwives has specifically said to its members, “We do not want you to be distracted by cord blood collection while you are trying to deliver a baby.” Obviously, anyone who is assisting at a birth wants a happy baby and a happy mum. The cord blood thing comes much farther down the line. Certainly, that was my experience of giving birth, and I believe that it is probably the experience of most medical professionals.

The scientist is not in the room saying, “By the way, make sure you get the cord blood, and make sure you put it in the fridge quickly.” If a midwife is dealing with a baby that might be in respiratory distress or a mother who is in the middle of a haemorrhage, all other considerations rightly go out of the window. The midwife wants a safe delivery, and the researcher stands in the university lab and weeps as the precious cord blood heads off with the placenta to the incinerator. I do not know whether people still take the placenta home. I certainly was not interested in that; we are back to the “ick” factor.

There is a challenging conflict between the NHS professional who wants to deal sensitively with, for example, a cancer or Parkinson’s patient, and the colleague back at the lab who wants to know whether they have consent to do lab work on the tissue samples. We have heard some interesting suggestions today about how the medical process can support the collection of tissue. Most hospitals have introduced MRSA screening prior to surgical interventions, and that would be a good way of doing it.

The national patient care record—a national database with everyone’s details—is another possibility. The patient could sit with their general practitioner and go through organ and tissue donation. The information could be there in black and white on the computer screen for every medical professional who deals with them at any stage of their life. The decision could also be revoked at any stage.

[Dr Huppert]

As the hon. Lady knows, there has been a great deal of concern about uploading data. I hope she agrees that if what she is discussing is to happen at all, a huge amount of data safety and security, and a simple mechanism whereby people can opt out, will be needed. Ideally, they would opt into such a system, rather than being given a limited opportunity to opt out.

[Mary Creagh]

I agree with the hon. Gentleman. I know that Liberal Democrats have an antipathy to the national patient care record and have called for it to be scrapped, but it might represent an excellent opportunity to deal with this matter. Of course, people would have to opt in, and nothing I have heard today changes that.

The hon. Member for East Dunbartonshire asked whether people would opt in or opt out. We need to go back and look at consent, which is at the heart of this debate. As we have heard, the Human Tissue Act 2004 created the framework for the removal, storage and use of tissues and organs of the deceased.

We must remember the circumstances that gave birth to the Act. It came about because of public inquiries into the events at Bristol Royal and Alder Hey hospitals, where organs and tissues from children who had died had been removed, stored and used without consent. Scientists have been doing that for generations. I do not think that there is any question about that, and we can understand why they want to progress medical research. However, years—in some cases, decades—later, families discovered that the children who they thought they had buried had not been complete.

The series of moral, ethical and religious issues that came out of that practice had to be, and were, addressed by the Labour Government. The inquiries together with the Isaacs report, which focused on the retention of adult brains following coroners’ post-mortems, revealed that storage and use of organs and tissue without proper consent was commonplace. We as legislators had a duty to change that.

The chief medical officer concluded that the law needed to be changed. We had a wide-ranging public consultation, “Human bodies, human choices”, which set out proposals and led to the Act that created the Human Tissue Authority, which licenses and inspects institutions. The Act is based on the principle that consent should be given by the living. If that key principle is to be changed, it must be changed with a great deal of consent. I do not detect a groundswell of public opinion or hon. Members in this House wishing to reopen the consent issue, despite the efforts of Dr Harris, the former Member for Oxford West and Abingdon.

[Jo Swinson]

In the context of the legislation, I agree with the points that the hon. Lady makes about consent being vital. However, would she accept that the current problem is that many people would be happy to consent, but their wishes are not being fulfilled because they are not even being asked?

[Mary Creagh]

Absolutely. The hon. Lady makes a valid point, and systems, policies and processes are the only way. It is not laws or our passing Acts in Parliament that will make it happen. This is about the 60% of trusts that do not collect any form of tissue, but get rid of everything. It is about people being made aware—there is an educational side to this—and it is about having a system in place. If we want people to donate their organs, we have to make it as easy as possible, so that they can do it when they open a bank account or go to Boots pharmacy to pick up a prescription. Whatever it is, it has to be made easy.

Most people hope throughout their lives that they will not need a huge amount of surgical intervention. That is what we all hope for, is it not? I believe that the hon. Lady is right that most of those who are unfortunate enough to have repeated operations would like to help other people through medical research.

It is important to say that lifetime consent for a tissue sample is already possible under current legislation, and people may give “generic and enduring” consent for their own sample, but the hon. Lady may be trying to bring to the foreground lifetime consent for any medical research purposes. However, the law in such areas cannot and should not stand still, and we must renew the working of the existing law.

I was interested to hear the hon. Lady’s reference to the Human Tissue Authority’s evaluation of perceptions of how the legislation and regulations that flow from it have affected researchers. The Human Tissue Authority has said that it wants to ensure that researchers have access to high-quality samples by consolidating stocks throughout the sector; that brings us back to the idea of banks. It also wants to reduce the regulatory burden on the research sector by using open-ended rather than fixed-term licences, and moving to a risk-based approach to regulation rather than regulating everyone.

The hon. Lady will be interested to hear that the Nuffield Council on Bioethics is consulting on options for boosting the supply of organs and human tissue. It is clear that a problem is emerging as fertility sciences improve. There is a shortage of organs for transplant, as many hon. Members have said, and of sperm and eggs for donation. I prefer to refer to “sperm” rather than “gametes”, not least because I do not know how to pronounce that latter word. Let us call a sperm a sperm.

Transplant patients and women seeking fertility treatment may travel abroad, often to places where different rules apply or, in the case of organ donation, where there may be an illegal market. We must watch that carefully because moral and ethical considerations may be involved if inducements are offered, whether cash or paying funeral expenses for people who give their organs. Those are some of the issues being debated, and the consultation closes on 13 July. I put that on the record so that any hon. Members who want to participate in the consultation may do so.

New stem cells made by reprogramming adult tissue into induced pluripotent stem cells—iPS cells—which come not from human embryos but from adult skin cells, have been possible only since 2007, so science is already well ahead of legislation in this area. The iPS technique could lead to new breakthroughs for Parkinson’s disease, motor neurone disease, diabetes and paralysis, and that would obviously be very welcome.

[Mark Tami]

My hon. Friend referred to breakthroughs, and stem cells are one of the major areas where breakthroughs are happening. However, we must remember that much research comes to a dead end. Sometimes when we believe that it is going a long way, it does not. The Daily Mail and the Daily Express may say that drinking coffee prevents cancer, and also that it causes cancer. There is no “one size fits all” or one magical cure, so we must go down many routes, knowing that some will be a dead end.

[Mary Creagh]

I agree that there is no silver bullet, much as we would like one, and my hon. Friend is right about the red tops’ approach to eating—or not eating—yoghurt, strawberries, blackcurrants or whatever fruit or drink is fashionable. It would be impossible to live our lives by their diet rules, certainly in the House of Commons Tea Room. We need to understand better, and the hon. Member for Cambridge has a responsibility to his former colleagues in Cambridge to be a champion and an advocate in this place—he has already proved in this debate that he will be—in respect of the benefits involved and the management of people’s expectations.

I understand where the research is coming from. The hon. Member for East Dunbartonshire said that researchers are a bit cagey about sharing with other researchers where tissue is held. Someone doing a PhD who has put three or five years of their life into it does not want someone else from a different country or different research institution publishing six months before them; let’s face it, academics are as competitive as the rest of us. I know from my experience at Cranfield School of Management that we loved sharing our research at conferences, but we lived in dread of someone coming up with the same idea and publishing it a bit sooner. It is incumbent on researchers to work out ways and methods of sharing their research in this area.

[Dr Huppert]

The hon. Lady is making an important point. A lot of work is taking place on open-access data and open-access publishing with the safeguards that she correctly requires, so that people who have invested a lot of time and effort—for example, in building up a bank—get first priority. I hope that she is aware that many of the research councils are increasingly mandating that data should be made openly available.

The hon. Lady is correct about interaction with the media. She may agree that one problem is the shortage of good science journalists, with a few honourable exceptions.

[Mary Creagh]

I thank the hon. Gentleman for that intervention. I was not aware that the research councils were making open access mandatory, but logically it is right that that should be done. Researchers enjoy taxpayers’ money, so it is right that it should be shared for the common good. Most historic scientific breakthroughs have been made through people sharing building blocks with each other, rather than through working in splendid isolation.

The hon. Gentleman is right about science journalists. There is a paucity because they may make two, three or four times as much money working for a big pharmaceutical company. Writing for people who may not be interested or who may even be openly hostile to science may be less alluring than working for a big pharmaceutical company and being at the heart of breakthroughs.

The Human Tissue Authority website is incredibly useful in listing establishments that have human application, research application, post-mortem application, anatomy licences and display licences. I had not realised that the display of human bodies was regulated, but that was controversial a few years ago.

I hope that today’s debate will lead to solid proposals from the Minister. I look forward to hearing what she has to say. We must tread carefully if we are to maintain public confidence in these vital areas and public trust in the medical research community.

--- Later in debate ---

[Anne Milton]

I thank the hon. Gentleman for his intervention. It is interesting that this is the first time that we have referred to the differences between ethnic groups, and that is an extremely important matter, but there is a resource out there that we do not necessarily use, which is the faith leaders in communities, who can perhaps raise the issue. That is why we need to send tentacles out, perhaps even from this debate, to ensure that we get the messages across in many different settings. We mentioned children; perhaps the issue should be talked about in school.

[Mary Creagh]

The Minister says that this is not a matter for the Department of Health, but is she not even a little curious about which hospitals do systematically collect and process the material, and about the 60% or so that do not? I am very curious about that. Her Department could easily map, with the resources that it has, where the hot spots and cold spots are. It could use the transparency that we have under the Freedom of Information Act almost to shame the hospitals that do not do it, or it could at least have a conversation with those that do not do it systematically, perhaps because they are not attached to a university or because they are not teaching hospitals. We could examine how we could encourage hospitals to do it and educate the staff about the wider benefits to the community.

[Anne Milton]

The hon. Lady is right. I think that in the end it is the differences that will spread good practice and drive up standards and professionalism in this area. She is right to say that we must examine why some places are so good on this. One example that I heard about recently is that of a trust that sends combined, personalised leaflets about consent to treatment to patients along with pre-operative medication. My colleague the hon. Member for East Dunbartonshire mentioned that. That trust is giving patients the time and chance to think about their treatments in advance. That is the type of innovative practice that we want. I do not believe that a standardised form is the answer.

I would also have some misgivings about routinely seeking consent to use tissue for research unless we could be confident that there was a good chance of its being used. One of the key complaints from the families affected by organ retention scandals was that everyone tried to justify the practice of routinely retaining tissue in the name of research, when in fact most of the material had never been used. There is a test that is applied to children, called the Gillick competence. We do not often use the opportunities that we have to raise the issue with children, or to ask them what they want to do.

Let me clarify that there are no plans to revisit the question of an opt-out system. Certainly, on a personal level, I would not be happy with such a system. It would require an extensive information and education campaign, and there would be ethical and practical issues if people were able to opt out of some types of research but not others. No doubt some people would be happy to give tissue for some types of research but not others. Everyone feels so differently about the issue; it is a very difficult area.

My colleague the hon. Member for East Dunbartonshire also raised the prospect of a tissue database and mentioned the work undertaken by onCore. I understand that onCore was originally set up to collect and store tissue in a national bank for cancer research. It now focuses mainly on bio-banking activity, and that shift reflects the research community’s local initiatives.

I also understand that there have been excellent developments through the National Cancer Research Institute’s informatics initiative. For example, there is the oncology information exchange, a free-to-use computer portal for sharing information on resources for cancer research, including tissue collections.

At the heart of the debate is the issue of improving access to tissue for research. Some initiatives are under way, and there are some examples of good practice, but a common cause of concern is the complexity of the regulatory and governance regimes. A lack of confidence and misconceptions about requirements have meant that residual tissue from diagnostic procedures may be archived for purposes such as clinical audit, but not available for research. Perhaps the appropriate consent has not been secured or the licence to store tissue for research has not been obtained from the Human Tissue Authority. Either way, the effect has been to stifle research, which is not what we want. Researchers complain of local resistance to new research programmes because they are perceived as being too risky or beset with rules and regulations. Efforts are being made to help NHS organisations to overcome those perceptions.

The HTA, in collaboration with the National Research Ethics Service, has set out the licensing, ethical approval and consent requirements to enable diagnostic archives to operate as tissue banks. The HTA’s annual review tells the story of Guy’s and St Thomas’ NHS Foundation Trust, which was one of the first establishments to license its archive of diagnostic histopathology specimens as a research resource. A histopathologist from the trust said that

“support from the HTA was very helpful for us in approaching our Trust management with proposals to license our diagnostic archive for research and upgrade consent processes”.

That is precisely the type of collaborative and supportive approach that we want and it is typified by a joint enterprise between the HTA and the National Research Ethics Service, which has helped to open up access even further.

I look forward to the outcome of the consultation by the Nuffield Council on Bioethics. This is clearly a dynamic issue, and I personally would like to keep it as such. It is about raising awareness and about the role that we in this place can play in raising the issue in our constituencies and with a wider audience. That is not just down to the scientists or those with a scientific background in this place, although their expertise is very valuable. The media can play a role. The organ donation taskforce report raised the issue of awareness, and there have been a number of reasonably successful campaigns in the past year, but I cannot re-emphasise enough how important it is to have public trust and confidence in the systems in place. It is important that we do not have burdensome legislation. It is important to raise awareness among all types of clinicians in training and to raise awareness among members of the public. Possibly it is a question of just changing the culture, so that people think, “I can change what’s happening in the area in which I work.” Sometimes we perceive barriers when they do not exist.

We have raised the issue of the differences between men and women, so I suggest that the men go hence and give blood. It is true that there are gender differences. It is extremely difficult to get men to go to their doctor with symptoms, particularly concerning anything below the waist. It is an issue to get men to come forward and donate tissue and blood. It is important and perhaps incumbent on all of us at certain times in the year to seek an opportunity to demonstrate by example that we are prepared to do that.

I thank my colleague the hon. Member for East Dunbartonshire not only for her contribution, but for allowing us all to have quite a collaborative discussion about the issue. There is no single solution. The NHS, the research community, clinicians and Government agencies have a part to play. In particular, the Government have a role in facilitating, but at the end of the day, they cannot take action on the ground. I hope that I have been able to reassure my honourable colleague and other hon. Members that some progress has been made, and that the various initiatives allow us to be more optimistic about the future. I reiterate that my door is open, and officials in the Department would be pleased to hear from anyone with examples of attempts to make progress that have been frustrated by rules, regulations or bureaucracy that prevent research in this important area from going ahead.